Altered eating: a definition and framework for assessment and intervention

Background: Eating can be a significant challenge for cancer survivors; however, to date there is no systematic way of assessing and addressing food related quality of life in this group. The purpose of our study was to develop a framework for doing so. Methods: Over the course of 6 years in participant-led food workshops, we worked alongside 25 head and neck cancer (HNC) survivors and their partners, employing video-reflexive ethnographic (VRE) methods. The current study reports on data from the two summative workshops of this series where we worked with participants to cohere the emergent themes. Video and transcripts were reviewed and coded with participants and stakeholders according to domains of life that were affected by food. Three of the authors, one of whom is both survivor and researcher, arrived at the consensus framework. Results: Seven areas of life were identified as affecting, or being affected by, altered eating. Three were physiological: anatomical, functional and sensory. Two captured the cognitive and behavioural labour of eating. Social life and identity were altered. The foregoing had an enduring emotional impact. Conclusions: Altered eating has physical, emotional and social consequences. The altered eating framework provides a systematic way of exploring those consequences with individual survivors. This framework has the potential to improve both the assessment and treatment of altered eating, to benefit food-related quality of life. Background Eating can pose profound challenges for patients recovering from cancers including head and neck, oesophageal, lung and bowel. In advanced cancer it is estimated that more than 50% of survivors experience concerns about weight loss and loss of appetite [1]. A recent systematic review of eating difficulties in cancer emphasises that there are no effective interventions for improving food-related quality of life, no consistent assessment methodologies, confusion in terminology regarding sensory issues, and little account of the importance of food hedonics and other aspects of what makes food enjoyable to eat [2]. Most research has looked at eating-related difficulties during treatment, with evidence that chemosensory changes may resolve around 8 weeks after treatment ceases. An emergent body of qualitative research has identified how treatment and cancer can have long term impacts on the ability to ‘eat well’ long after treatments ceases [3–12]. Ganzer et al’s (2015) review of qualitative literature found several consistent themes across studies that demonstrate a ‘significant impact’ on the experience of eating and changed meaning of food. The themes cross social, psychological and cultural issues in addition to the more commonly reported physiological and functional difficulties [11]. Ganzer et al conclude that further studies should consider ‘not only the functional impact associated with treatment for HNC but also the social and emotional context of eating’ [7]. Their conclusion also follows the systematic review of Cousins et al [13] in identifying the tendency for researchers to focus on the (often short term) medical complications of treatment with (chemo)radiotherapy and the impact of dysphagia (swallow difficulties) [14]. Authors stress the necessity to look beyond functional difficulties to consider a more ‘holistic’ * Correspondence: [email protected]; [email protected] Equal contributors Institute of Health and Society, Newcastle University, Newcastle Upon Tyne, UK School of Life Sciences, Northumbria University, Newcastle Upon Tyne, UK Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Burges Watson et al. BMC Nutrition (2018) 4:14 https://doi.org/10.1186/s40795-018-0221-3